A program of telemedicine that serves individuals with autism and their families is being expanded beyond the borders of Missouri, where it was established.
Project ECHO for autism started expanding its geographic reach this spring to Arizona, Alaska and Nevada, and the initiative soon will also reach Kenya, which is setting up its own service. Agencies in China, India, Vietnam and Uruguay also are working to get on board.
In 2003, Project ECHO had its start when Sanjeev Arora, a specialist of liver disease at the University of New Mexico, developed it as a telemedicine initiative to expand sufferer access to treatment for hepatitis C while also educating physicians. Over the years, other programs of ECHO covering more than forty other diseases have been developed.
Kristin Sohl, director of the Missouri program claims that since the institute of University of Missouri took the New Mexico program and adapted it to serve individuals with autism and their families, fourteen other academic medical centers have replicated the model.
Project ECHO for autism isn’t a conventional telemedicine program in which a physician or nurse practitioner conducts an online, real-time consultation with a sufferer or another clinician. Instead, once every 2 weeks, about 2 dozen clinicians serving similar kinds of patients sign into a ninety-minute “telementoring” online presentation where a specialist presents a real-life but de-identified sufferer case study, followed by a question-and-answer period.
Sohl calls the presentation “a community of learners all learning at the same time; it is a type of like a virtual clinic.”
Autism program of Project Echo involves an expert team composed of a clinical psychologist, social worker, pediatric dietician, pediatric autism specialist and a parent to oversee training of primary care providers—about 250 to date—to diagnose and handle autism spectrum disorders.
A parent representing families with autism in the community is the great thing about the program because they bring patient-centered care to the forefront, in accordance with Sohl, who is an administrator and doesn’t give any direct patient care.
A parent will ask queries that clinicians generally wouldn’t think about, like whether clinicians thought about and understand parental stress levels, or if the clinicians know which parents are grieving following a diagnosis of autism and if any support is being provided to them.
Sohl said, “The parent representative can say, ‘Hey, this mom is in denial. The parent assists pediatricians understand the parental challenges.” Physicians who know which families are overwhelmed can make sure that a parent is called every couple of weeks just to check in and provide new ideas or tools to assist cope.
The program of Missouri has received support from the Health Resources and Services Administration, state-funded Missouri Telehealth Network, Autism Treatment Network, Autism Speaks, Leda J. Sears Charitable Trust and WellCare Innovation Institute.
Further information and help starting local programs is available here.